PANDAS, Vulnerability, and God's greater plan

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.  The scientific jargon is a little confusing, so I'll explain it in real person terms.  It's a disorder that mimics Tourettes and Autism.  Some say it's on the Autism Spectrum, some say it's not.  In Bryson, it mimics autism and Tourettes when he is having a food reaction, is overstimulated, over tired, or gets an illness.  Other than that, lately he's been pretty neurotypical.  A little bouncing off the walls and into furniture, but I can't complain.

Have you ever made yourself vulnerable?  A little too vulnerable?  I'm talking holy-cow-I-feel-so-uncomfortable-but-I-can't-help-it vulnerable.  Put yourself out there a little too much?  Yep.  I did that.

I was having a bad, well horrible, few months.  Guilt, blame, anger, sadness, guilt, blame, anger, sadness......like a broken record.  At our MOPS meeting, the speaker was talking about guilt.  The first time he said 'guilt' I left the room in tears.  I honestly don't know what he said during the rest of the speech.  I do know he passed out these sheets that asked us list what was expected of us as mothers and my thought was "to protect your child."  And I felt I didn't do that.  That I'd put my innocent baby in harms way.  That his health is all messed up because I didn't do enough research before making decisions.  By the end of the MOPS meeting, I was a blubbering mess and I blubbered that mess onto our mentor mom.  I'm sure she felt completely caught off guard.  What was this crazy talk?  I did it again at small group....twice.  So, now I feel exposed....vulnerable.  As a shy person, I prefer to keep unfavorable feelings tucked away like a napkin in my pocket.  But my feelings erupted and I let people see my mess of a tissue.

If I could do this year all over again, I'd give myself permission to cry, to vent, to lash out, to complain about the unfairness of it all.  I would tell myself to do this in the presence of God.  Because when all these feelings are stuffed inside, there is little room for joy, for love, for peace.  It's impossible to be an effective anything when joy, love, and peace are lacking.  God is the great healer and I need(ed) to let Him in to heal.

I'm feeling some of that peace and it's a good place to be.  I know it's just a taste of what God can do with this broken heart.  He has blessed us even through this trial.  Awesome.

My little brother (okay, so I need to stop calling him that because he towers over me) said something to me that has had a profound effect.  I was telling him how B's story has been able to help others and that I'm grateful for that, but why does B have to suffer for it?  My brother said maybe the goodness is not lost on B.  God is teaching B incredible self control, preparing him to be the man God intends him to be.  Preparing him to fulfill God's will.   Amen!

Versatile!

I won this award:

Hooray! :0)


I'm not embarrassed to admit I Googled Versatile.  This is what it means according to dictionary.com :

• capable of or adapted for turning easily from one to anotherof various tasks, fields of endeavor, etc.: a versatile writer.  (Yup.  Some may call it ADD.  I much prefer versatile.  And the shoe fits.)

• having or capable of many uses: a versatile tool. (I can write a blog, shop online, check facebook, get my kids back into bed, get my kids back into bed again...all at the same time.  I have many uses!)

• Botany . attached at or near the middle so as to swingfreely, as an anther. (Huh?  I swing freely?  Like an anther?)

Here are the rules for accepting this award:

1. Thank the person who gave you the award and link back to them.

    Thank you Tasha at One Day at a Time.....  Tasha has a sweet blog about her life and  family.  She is a huge advocate for her little boy with Infantile Scoliosis.  And she is a home educator.  I could learn a lot from her!

2. Tell 7 things about yourself.

Ummm....hmmmm...

• When I was 17, I went on a date with a gorgeous guy.  I was smitten.  We're still dating....even if our dates often include our children.  And I'm still smitten.

• I love all vegetables accept for eggplant.  I really want to love it...but yuck!  Maybe I just don't know how to cook it.  I really wish the rest of my family would love veggies because it's really hard to eat a sack of turnips by myself.

• I was a preschool teacher before I had kids and I LOVED teaching.  I miss it sometimes, but I find being a stay at home mom to be more rewarding.

• I'm not scared of bugs if they have 6 legs or less.  Anything over 6 legs is just plain creepy.  I made myself hold a millipede in college to get over my fear. *shudder*  Obviously, it didn't work.

• If any sport involves a ball, even putt putt golf or bowling, I will lose.  Or my team will lose.  I'm that uncoordinated.

• I really enjoy doing the laundry.  I find it soothing, and I can fold while I watch the television.  If anyone would like to clean my kitchen, I'll do your laundry.  Any takers?

• I thought I'd be a lot better at being a wife/mom.  I think we all think that, don't we?  Sometimes I wish I had a mentor to come in and show me how it's done.  But when my kids give me a zillion hugs throughout the day and when Erik gives me that same smile that melted my 17 year old heart, I realize God has blessed me immensely and I'm eternally grateful. 

3. Now I must pass on the Versatile Blogger Award.  I follow a lot of great blogs!

I'm linking to my dear friend at Copelands on the Cusp.  She just has the sweetest family.  I love her writing and I admire her mothering skills.  I want to be her when I grow up. :)

PS- Please forgive the funkiness of this blog entry's format.  I'm not quite sure what happened, but I'm going to swing like an anther and let it go.

Funky Flaws and Following Through

We've all got weird quirks and funky flaws....right?  Please tell me I'm not the only one.  For instance, I have a phone dialing phobia, but I love to receive phone calls.  I can walk over a pair of shoes in the middle of the hallway for two days, and they only seem out of place to me if company comes.  I've lost my keys so many times, Erik had about six keys for our minivan made for me.  I use lots of run on sentences, too many commas, and commas in all the wrong places.  Here's a new one I've discovered:  If I say I will blog about something in my blog, I don't....or I can't seem to put together the words to form the post.  Remember how my home school post only had parts one and two?  Remember when I was going to blog about everyone who has so graciously helped us with B?


(I need to add a HUMONGOUS thank you to Seth here.  Our friend Seth drove to our house weekly, sometimes twice a week, to give B his allergy shot for us.  How many people are that kind and generous?  Thank you! Thank you! Thank you!  And thank you Shari for praying and being so supportive of Seth helping us out.  You two are wonderful!)

Back to the following through......I said I was going to write about the GAPS diet and haven't tackled it yet.  So, I will not blog about it...ever.  Especially not in the next week. I won't explain how it heals a leaky gut.  How animal fats and fermented foods are good for you.  I definitely won't tell you how it can decrease food intolerances.  I won't write about deciding B and I will be doing this together.  All this will not be coming soon.......so stay tuned. :)

Hotdog Soup

Sounds disgusting, huh?  I threw it together tonight and B & Jilly loved it, so I thought I'd share.  this would be much healthier with dried, soaked beans...but I was in a pinch for time.

1 can of black beans drained and rinsed
1 nitrate free buffalo hotdog sliced
1 carrot peeled and chopped
1 stalk of celery chopped
1 1/2 cups of sea salted water or beef broth if tolerated
ground fennel to taste
cumin to taste

Add all ingredients and bring to a boil.  Then simmer until vegetables are soft.

It's not gourmet, but when B and Jilly both like something, it's worth sharing. :)

Edited to replace sage with fennel and to say this really is a kid soup.  I didn't like it, but B & J loved it.  So, cook at your own risk!

Update

B is doing really great.  Sometimes we get that look from people I know means they wonder if there is anything wrong with B's health at all.  I wonder if they think I'm some kind of Munchausen mom.  Believe me, this is not the case.  I would LOVE to give B slice of cake and ice cream or just make him a pb&j on the fly.  It would be FANASTIC to not give him allergy and B12 injections.  It would be AWESOME if he didn't have to take  supplements.  The fact that we get these looks means all of the above is working.  Hooray!

We had an interesting time this month when B caught some kind of infection.  We suspect strep because of the PANDAS and the way he was acting.  The throat culture came back negative, but strep can target other parts of the body, so I'm not convinced it wasn't a PANDAS flair.  Any veteran PANDAS moms want to weigh in?  This really is all new to me.

B woke up screaming that the light was hurting his eyes.  Uh-Oh.  He had a fever and was lethargic.  I sent him back to his bed.  Periodically, he'd get up to use the rest room or get a drink.  When he washed his hands, he turned the water off, then on, then off, then on about 10 times.  Then I heard a squeak, no, more of a hiccup.  When I checked on him, I realized he was swallowing air.  Over and over again.  A new tic.  Throughout the day, his little tummy became so distended, he was crying.  "Mommy, is my tummy going to feel this way forever?" More squeaks.  Swallowing air.  He was throwing screaming tantrums.  Fixating on things.  At one point he screamed, "I'm going to throw up!" and ran to the bathroom where he let out the longest burp.  Poor kid had swallowed too much air.  The next day, he just cried and yelled, "I can't stop burping!"  He couldn't stop swallowing air.  His other tics all came back, too.  I was worried.  

We called his DAN.  With B's leaky gut, antibiotics are a scary thing.  Antibiotics create more yeast which leads to a leakier gut which leads to more food allergies.  However, a PANDAS flair damages the brain.  Basically, B creates too many antibodies to strep and they attack his brain.  So, the strep needs to be taken care of.  Our DAN recommended we take him to our GP and start B on an antibiotic.  We did just that.  His tics went away except for the swallowing tic.  It seems pretty comfortable.  Our DAN has ordered a test to measure B's strep titers.

Shortly after we finished the course of antibiotics, B's shoulder tic reemerged.  We've noticed he is reacting to some new foods.  Unfortunately, I haven't been able to pinpoint the culprits.  But his ears will turn red, his tics will increase, his tantrums will flair, he'll get a few red splotches on his face.  But this is on a small scale compared to what was going on when he was sick. 

This really showed us that we need to heal his gut, not just avoid foods.  He can't stand to lose any more foods, so we researched some options.  We have decided to follow the GAPS (Gut And Psychology Syndrome) diet.  I will blog more about GAPS hopefully tomorrow.  We will begin when we return from Autism One.

Speaking of Autism One.  I would like to give an overview of the sessions I see on my blog.  I may have Erik be a guest author because he is the one with the scientific brain.  Coming soon in May (I hope!).

Oops...forgot to add.  B has grown and inch and a half and gained two pounds! Yay!  He is growing!

I Will Protect Him

Before my break, I was feeling down, defeated, and really just plain scared.  I was feeding myself too much information.  I really needed to take a step back and focus on what was important.  I took a break from vaccines, autism, politics, the news, etc...  I can't even begin to tell you how much lighter I feel.  Today, my little brother gave me this quote from AW Tozer: "Nothing should so occupy the mind of the Christian than discovering God each day."  I'm going to tape that to my mirror as a reminder.  Admittedly, I did not seek Christ diligently every day.  God is still working on me.  I took me weeks to realize that a relationship isn't me trying to sneak in a quick quiet time that consists of me reading the word and talking then shutting my Bible.  A relationship with God requires me to listen, to pause, to ask questions.  Isn't that how relationships work?  This does not come easy to me.  I'm still growing.

The first day of my break, Erik was wonderful and watched the kids so I could have a few hours to myself.  I went to a coffee shop, ordered a hot chocolate, and settled down with my Beth Moore Bible study on King David.  (I highly recommend it!)  I was reading, studying, and in the back of my mind thinking of B.  Thinking of the vaccine issue.  Worrying about what ifs.  What if they (vaccines) are mandated.  What if choice is removed.  What would happen to B if this were to happen.  I continued my study when suddenly I felt God speak to me...not heard Him, but felt him. ( It was very similar to this moment: Adjusting )  "I will protect him."  At that moment, I am a sobbing mess in the coffee shop.  Relief, joy, a years worth of worry just melting away.  Now, I don't think that means protecting B from everything life throws his way...but just the issues I was worried about.  I will hold onto those words forever.  I wrote them down as soon as I felt them.

I'm baaaaack

I have so much to write I don't know how I'm going to fit it into one post...maybe I won't.

First, I have to say the time away from facebook/forums/blogging was much needed and cleared my head.  I realize I was beginning to sound a little cuckoo.  I was tempted to hide some posts, but then this blog wouldn't be sincere, so the ugly stays.  I do have a confession.  I went on the internet to research a new nutrition plan for B, to show B what an eardrum looks like, and to look up a few recipes....oh, and I googled toxic encephalopathy.  It was written on B's medical chart and I wanted to know what it was.  Silly me, google didn't take into account that biomedical treatment can fix  things like toxic encephalopathy.  I'm not going to worry.

I feel refreshed.  Renewed in spirit.  So thankful for my heavenly Father and the sweet family he has blessed me with.  Amen and Amen! :)

Now, since my brain works in boxes, I'll start the update in a new post.



.